can children with autism master the core deficits …€¦ · abstract: a follow-up study of 16...

Abstract: A follow-up study of 16 children diagnosed with an autistic spectrum disorder(ASD) revealed that with the DIR/Floortime approach, a subgroup of children with ASD canbecome empathetic, creative, and reflective, with healthy peer relationships and solid academicskills. This suggests that some children with ASD can master the core deficits and reach levelsof development formerly thought unattainable with a family-oriented approach that focuses onthe building blocks of relating, communicating, and thinking.

There is mounting evidence that emotional processes, such as engagement, joint at-tention affective reciprocity, and creative play are associated with healthy social, lan-guage, and intellectual functioning (Greenspan, 2004; Mundy, 1993; Sigman, &Kasari, 1990; Siller & Sigman, 2002). Therefore, we raise the following question:Can these processes be harnessed in children with autism spectrum disorders (ASD)to enable them to make more progress than formerly thought possible? It has beenbelieved that children with ASD are incapable of higher levels of empathy and cre-ative and reflective thinking, no matter how much progress they make academicallyor with language.

In this paper, we report on a follow-up study of 16 children and families who en-gaged in the Developmental, Individual-Difference, Relationship-Based (DIR/

CAN CHILDREN WITH AUTISM MASTER THE

CORE DEFICITS AND BECOME EMPATHETIC,

CREATIVE, AND REFLECTIVE?

A Ten to Fifteen Year Follow-Up of a Subgroup of

Children with Autism Spectrum Disorders (ASD)

Who Received a Comprehensive Developmental,

Individual-Difference, Relationship-Based (DIR)

Approach

Serena Wieder, Ph.D. and Stanley Greenspan, M.D.

39

DLD Journal F04(39-62).ps 10/17/05 3:01 PM Page 39

Floortime) comprehensive intervention program that focused on the building blocksof relating, communicating, and thinking. The DIR/Floortime assessment and inter-vention program also addresses the individual variations in sensory processing (au-ditory and visual-spatial processing), sensory discrimination and modulation (in-cluding tactile, sound, vestibular, proprioceptive, olfactory, taste, pain, and sight),and motor planning and sequencing (including muscle tone, and coordination), aswell as family interactive patterns (Greenspan & Wieder, 1999; 1998; Interdiscipli-nary Council on Developmental and Learning Disorders Clinical Practice Guide-lines Workgroup, 2000).

In this study, we attempted to answer the question of whether or not a subgroupof children diagnosed with ASD could go beyond expectations for high-functioningASD and learn to be related, empathetic, creative, and reflective thinkers. This re-port is not intended to be an outcome study of the DIR/Floortime model, but onlyto answer the specific question raised above. Observing if a subgroup of childrenwith ASD can achieve levels of functioning formerly thought unattainable is espe-cially significant in light of the different intervention approaches now being offered.Some approaches focus more on surface behavioral changes and academic skills andothers, such as the DIR/Floortime model, focus more on the developmentalprocesses leading to relating, communicating, and thinking. Looking at the upperlimits attainable by a subgroup of children with a good prognosis, who had access toan optimal developmentally-based program, can therefore shed light on both themechanisms involved in helping children with ASD grow psychologically and intel-lectually and the potential of some children in an optimal intervention program.

In an earlier paper reviewing 200 cases of children with ASD followed 2–8 yearsafter the start of intervention (Greenspan & Wieder, 1997), we reported that a sub-group we treated did exceptionally well, learning to engage, communicate, and thinkcreatively and reflectively with high levels of emotional understanding and empathy.Although in this chart review (summarized on the following page), 58% showed theseoptimal patterns, the 200 cases reviewed were not a representative population of chil-dren with ASD. Therefore, the true size of the subgroup is not known.

Before we present the current study, it will be useful to briefly present anoverview of the earlier review to create the context for the current follow-up. Table1 summarizes the presenting problems of the children and Table 2 the DIR/Floor-time Intervention outcomes.

In the 1997 study, the authors looked more closely at 20 children in the good tooutstanding outcome group in two ways (Greenspan & Wieder, 1997). We used theFunctional Emotional Assessment Scale (FEAS. Greenspan, DeGangi, & Wieder,2001), a reliable and validated instrument which measures emotional, social, and in-tellectual functioning, to compare these 20 children to an age and socioeconomicstatus-matched group of peers with no history of developmental challenges, as wellas a group of children with ASD who had continuing challenges. We found therewere no differences between the DIR/Floortime intervention group and the “typi-cal” peer comparison group in terms of emotional, social, and intellectual function-ing, but significant differences with the group that had continuing difficulties. SeeTable 3. We also assessed the group of twenty with the Vineland Adaptive BehaviorScale which measures three domains. As can be seen in Table 4, the group of twentyscored higher than age level in all domains, especially in communication and so-cialization (Sparrow, Balla, & Cicchetti, 1984).

40 SERENA WIEDER AND STANLEY GREENSPAN


Table 1—Chart Review of 200 Cases

Developmental Patterns*

Presenting Patterns

Engagement • 5%—no affective engagement• 31%—only intermittent engagement• 40%—intermittent engagement and some reciprocity• 24%—intermittent engagement and reciprocity and islands

of symbolic capacity• 100%—lacking long chains of reciprocal interactions

Auditory Processing • 100%Problems

Motor Planning • 100%Dysfunction

Reactivity to Sensation • 39%—Underreactive• 19%—Hyperreactive• 36%—Mixed

*Journal of Developmental and Learning Disorders, 1997

Table 2—DIR/Floortime Intervention Outcomes

All Degrees of Implementation of Recommended ProgramN=200

Good to Outstanding 58%

Medium 25%

Ongoing Difficulties 17%

Table 3—FEAS Outcomes

N Mean FEAS Range

DIR/Floortime Intervention Group 20 74.8 70–76

Normal Comparison Group 14 74.9 65–76

Continuing Significant Difficulties 12 23.7 10–40

Table 4—Vineland Outcomes

Sample of Children with Good to Outstanding OutcomesN=15

Higher than age levels in communication 93%

Higher than age levels in socialization 87%

Higher than age levels in daily living skills 53%

DIR APPROACH——10–15 YEAR FOLLOW-UP STUDY 41


LONG-TERM OUTCOMES

In this presentation, we report on a ten to fifteen-year follow-up (since the startof treatment) of 16 of the children for whom we were able to obtain follow-up data.See Table 5.6 The children were all boys, ranged in age between 12 and 17, with amean of 13.9 years. This follow-up was exceptional in its comprehensiveness andprovides one of the most complete pictures of the development of children diag-nosed on the autism spectrum. The follow-up addressed the full range of emotional,social and sensory processing variables in addition to traditional cognitive and aca-demic outcomes. We found this group developed high levels of empathy (very ad-vanced on theory of mind tasks) and were often more empathetic than their peers.Some became very talented in music and writing and some developed into wonder-ful poets. Most were outstanding students, excelling in many academic areas, whileothers were average students, while a few struggled academically with learning dis-abilities because of executive functioning and sequencing problems. As a group,they showed the expected range of mental health problems, often depending uponfamily circumstances, and a few were anxious or depressed as adolescents. Impor-tantly, however, they coped with the stresses of puberty, family conflicts (includingdivorce), parent illness (cancer) and maintained their core gains in relating, commu-nicating, and reflective thinking. Since this was the second follow-up of this group, itis also noteworthy that they not only maintained their initial gains (Greenspan &Wieder, 1997), but made further progress and were overall equipped to handle thestressors of adolescence and life events.

Table 5—Follow-Up of Long Term Outcomes

Report on cases originally used to validate outcomes with the Vineland and FEAS in our 1997 Chart Review of 200 Cases

• Current Ages—12 to 17 years• 16 boys• First concerns between 12 and 24 months• All diagnosed with PDD or Autistic Spectrum between 24 and 30 months by others

Excerpts from Interviews with Four Boys in Follow-Up Study

Before we describe these children in more detail, let’s look at a few excerpts fromrecent videotaped interviews. Two interviews were conducted by parents in theirhome and two by interviewers (first author and research assistant).


6Fourteen of these children were in the validating group identified in Table 4 (with Vineland) and twomore were in the group for whom the FEAS was completed.


DAVID, AGE 121/2, EIGHTH GRADE

David is a warm, friendly, confident youngster with curly hair, a big metallic smile,and impish gleam in his eyes. He is both amused and awkward in creating the video-taped vignettes of his life but cooperates as the camera follows him. The video startswith David lounging on a sunny deck in the back of his home as he spontaneouslyreports on all the activities he is enjoying now, exuding considerable self confidenceand pausing to directly look at the camera to convey a message of appreciation.

Parent: So, tell us what you are doing these days, David.

David: Right now I’m playing the sax, the piano, and I’ve got lots of good friends,and I’m getting really good grades. And I’m also in the jazz band at schooland I’m getting ready for my bar mitzvah now and I’m almost ready. Lastsummer I went to ____ Camp and I had a great time. I took up water ski-ing. Right now I’m learning to slalom on one ski and I’m just having a greattime lately. And I owe it to you.

As the tape continues, we see scenes where David is meeting with his basket-ball team and playing video games with his friend. Later, we hear him say, “Allright, I’ll clean up the room, I’ll clean up the room, just stop bugging me!” We alsosee him helping his sister with her homework. The tape is an impressive compila-tion of different scenes from this child’s life, reflecting the range of his self-confi-dent functioning.

ADAM, AGE 14, NINTH GRADE

The second child, Adam, was taped late at night by his mother and was beingpushed to do the interview. Adam is seen lying semi-curled up on the couch, eyeshalf-closed, complaining about doing homework. He drags out each word, givinghalf-answers, with a “get me” gleam in his eye letting his mother know she will haveto work for his answers, yet warm and humorous. Here we will see a young adoles-cent reflecting off an internal standard as he discovers himself as a person who likesto learn. Although it started with “pulling teeth,” as one would expect of an adoles-cent, and initially he couldn’t admit that he liked school, Adam actually went on totalk about how much he liked school and the assignments that interested him. As ayounger adolescent he also knows how to goad his mother into saying “no” enjoy-ing how well he can predict her behavior!

Parent: Who forces you to do homework?

Adam: Take a guess.

Parent: Me?

Adam: Take another guess.

Parent: Dad.

Adam: Take another guess.

Parent: Miss _____?

Adam: Well, the whole school.

Parent: So, do you like school?



Adam: It’s okay, yeah.

Parent: Are you happy at school?

Adam: Yeah.

Parent: Adam, why are you sitting like that?

Adam: I’m tired.

Parent: Why are you tired?

Adam: Because I’m sleepy.

Parent: What time did you get up?

Adam: Basically the time I get up every day: 6:45.

Parent: That’s so early. So, do you feel tired at school?

Adam: Yeah, I want to fall asleep but I know I can’t. And even if I could, probablycouldn’t.

Parent: It sounds to me, just hearing this snippet of conversation for the last 15 min-utes we’ve had, that you don’t like school. Is that true? It just sounds as ifyou think school’s kind of boring.

Adam: No, I think . . . I like it, it’s just I don’t really want to say it because I’m tired.

Parent: So, did I get you at a bad moment tonight because you’re tired?

Adam: I’m tired and I didn’t realize it would take this long.

Parent: Oh, should I get you at quarter of seven in the morning instead?

Adam: Can I watch my big television now?

Parent: No!!!

The whole tape is a wonderful, lazy flow of a typical adolescent boy beingpushed to do an interview when he’d rather be doing something else.

SAM, AGE 16, TENTH GRADE

Sam is a tall, handsome disheveled teenager with long dark hair who chats sponta-neously and confidently, conveying “I know about life now!” He enjoys his maturestatus and has an opinion about everything. In the next clip we will see Sam reflecton the elections which just finished.

Interviewer: Any other topics to explore? You shared a lot of good stuff and youropinions, which is what we wanted to hear, how you feel about things—so what do you think about yesterday’s events and the way this electionturned out?

Sam: I didn’t like how it turned out.

Interviewer: Yeah, yeah.

Sam: I don’t know. I saw a really, really dumb commercial. It was about thiswoman saying she lost her sister or something and she looks at GeorgeBush and George Bush knew about it, and he hugged her, and her say-ing, you know, Bush is so caring. And, I mean, in public everyone’sgoing to do that for a photo op. I mean, just because Bush hugged a lit-tle girl in public doesn’t mean you should vote for him just because youthink he’s compassionate. You know, we attacked Iraq with no good



reason. We found Saddam Hussein in a hole. We haven’t found theweapons of mass destruction for the simple reason there are nonethere. And they never really attacked us unless you count the time along time ago. They had nothing to do with it. They had nothing to dowith 9/11.

Interviewer: Have you seen the Michael Moore movie?

Sam: Yes, I have. I liked it.

Interviewer: Yeah, what’d you think of that?

Sam: He over-exaggerated a few things, but there were a few things I didn’tknow about. I did not know how many of those . . .

Sam went on for quite a while and had something to say about everything. Hewas not only interested in his own life, but was quite a student of the world, politics,and people. It was striking how he was now thinking and empathizing with others,no longer at the center of his own universe. He enjoyed a rich extra-curricular life,had many friends, and excelled at school.

JACK, AGE 17, HIGH SCHOOL SENIOR

Another boy, Jack, a tall lanky adolescent, appeared more serious and thoughtful.He was one of our oldest teenagers in the outcome study. He was an outstanding stu-dent, continued to enjoy a team sport he had started playing as a kid, and volun-teered to help the poor. Jack was a senior in high school applying to colleges and wasasked what he might like to study. In this clip he reflects on journalism and an in-terest he developed during his senior year in high school.

Jack: This (journalism) is my favorite thing to do.

Interviewer: What do you write about?

Jack: A bunch of things—I write for my newspaper, I write about history, Iwrite about theology. My favorite subjects are theology, history, andEnglish. They’re analytical subjects.

Interviewer: They sure are. How did you get interested in theology?

Jack: I didn’t even know what it was till this year, but I had taken a class thisyear and it just really interested me—the different views that peoplehave of God. It’s very interesting, because there’re so many differentways to look at it.

Interviewer: What do you think? What is your view?

Jack: I honestly am not sure. But it’s definitely something I want to continuestudying.

Interviewer: Why does it interest you?

Jack: Because it’s more analyzing. Anything like philosophy and theologyyou can analyze what life is, what the meaning of life is—it’s very inter-esting to be able to do that!

Jack was intrigued with the meaning of life at this stage as he was about to em-bark on a life away from home. As a student he had relied upon structure and goodgrades to define himself. As will be seen when we discuss the academic outcomes,



many of the children in the follow-up study not only took regular high-level aca-demic courses in school, but took some Advanced Placement and honors courses aswell. These children were capable of multi-causal thinking and were very interestedin reflecting on what things meant to them. They saw things in “shades of gray.” Inother words, they had reflective thinking capacities.

The major findings of this follow-up are illustrated by these four clips showingengaging adolescents who could relate with warmth and empathy, express theiropinions, give to others, and reflect on the world around them as they grew older.They were doing the hard work of adolescence in all respects as they studied hard,played hard, and related to others with openness and confidence they could holdtheir own. Speaking with them, it was hard to remember that they were all childrenonce diagnosed with ASD between two and three years of age. The intensive DIRbased interventions which allowed them to change and develop will be describedbelow. What is noteworthy is that for this subgroup of children the core deficits ap-pear to be reversible. Furthermore, in this follow-up study we saw that even after theintervention was completed, the children in this subgroup continued to hold theirgains and continue to develop in a healthy way.

Parents Perspectives

The children in this subgroup are now 12 to 18 years of age. When we reportedon their cases in the 1997 study, they were between four and eight years old. Con-siderable time had passed and we were interested in hearing the parents’ perspec-tives of how their children were functioning at the present time.

Our first query to the parents was open-ended: “Tell us how your child is doing”and these are some of their first words:

“Amazing when I think about who he was.”

“A miracle child.”

“He’s doing great.”

“He’s happy.”

“I’m not parenting a child with special needs, just an adolescent boy.”

Other parents reported:

“He is sweet, empathic, accommodating, and earnest.”

“So caring and observant, so humorous.”

“He is in touch with himself and others.”

We were struck by how the parents first described the emotional qualities theyvalued in their children rather than their academic achievements and the lingeringawe they felt that the children they were told were autistic had become such won-derful, well grounded kids. Their comments reflected upon a group of very em-pathic, compassionate young men who were caring, funny, and observant of others.Some were still working hard, struggling with some academic areas and other chal-lenges, but all had become part of life in all its dimensions.



Information Collected for the Follow-Up Study

We conducted parent interviews and asked parents to complete a functionalemotional developmental questionnaire (FEDQ) (Greenspan & Greenspan, 2002)which provided their ratings of various domains described below. We also rated ourimpressions of the children independently based on the interviews. For some, weused videotapes made by parents or our direct interviews with the children, and withothers audiotapes recorded via telephone. These provided the basis for the inde-pendent clinician ratings that were conducted separately from the parent ratingswhich were mailed in. We collected school reports and obtained IQ tests when avail-able. It is interesting to note that very few of the children were tested for IQ. Mostparents indicated there was no need to have their children tested. We also adminis-tered the Achenbach Scales (Achenbach, 1991), a child behavior checklist (CBCL)that rates competence and clinical syndromes, to provide an objective assessment.See Table 6.

Table 6—Current Study

Follow-up study included:

• Parent Interviews and FEDQ Ratings• Clinician FEDL Ratings Independent of Parent Ratings• Child Interviews (videotaped)• School and Cognitive Reports• Child Behavior Check List—Achenbach Scales (CBCL)

THE DIR/FLOORTIME INTERVENTION PROGRAM

The DIR/Floortime approach provides a comprehensive framework for under-standing and treating children challenged by autism spectrum and related disorders.It focuses on helping children master the building blocks of relating, communicatingand thinking, rather than on symptoms alone. As can be seen in the Tables on thenext page, all the children received comprehensive intervention programs, includingfive to thirteen different types of interventions depending on their individual needs.An average of eight specific interventions were implemented between ages two andeight and a half. All the children received DIR/Floortime consultations from one ofthe authors and all did Floortime at home. Fifty-six percent of children had addi-tional Floortime therapy. The emphasis, however, was on the home program. Sev-enty-five percent implemented a very serious play date program we recommended—at two, have two play dates a week, at three have three play dates, etc. throughkindergarten and then to maintain as many as possible during school years. In addi-tion, all the children received speech and language therapy and many continuedthese therapies for a few years after preschool. All children received clinic based oc-cupational therapy with sensory integration, in addition to their home program. Allalso received auditory integration therapy. When asked which interventions were



most effective, parents reported that Floortime at home, Floortime therapy withtheir child and a therapist, and playmates were the most significant interventions.

Other therapies varied quite a bit. Some of these therapies have become morepopular now, but were not so at the time (e.g., casein/gluten-free diets). At schoolage a small number continued Floortime therapy, two started psychotherapy duringadolescence, and four children received educational therapy. Several children alsoreceived tutoring for specific school subjects when needed.

Table 7—Comprehensive Intervention Profiles

Average number of different interventions: 8Range of interventions: 5–13Ages: 2–8.5 yearsDuration of intensive interventions: 2–5 years

Table 8—Comprehensive Intervention Profiles

N=16

DIR Consultation 100%Floortime at Home 100%Floortime Therapy 56%Play Dates 75%Speech and Language Therapy 100%+Occupational Therapy 100%+AIT/Tomatis 100%Visual Spatial Therapy 19%Biomedical 38%Cognitive/Ed Therapy 13%/13%Nutrition 44%+Diet 13%/25%Meds at School Age 25%Family Therapy at School Age 13%Adolescent Psychotherapy 19%Other 19%

= Parents report most efficacy; + = also helpful

Parent Ratings of Functional Emotional DevelopmentalCapacities

We asked the parents to rate their children on items organized around the sixcore developmental capacities and three higher order abstract capacities using theFunctional Emotional Developmental Questionnaire (Greenspan & Greenspan,2001). The questions are based on the Functional Emotional Developmental Levels(FEDL). See Table 9. Parents were very familiar with these levels as they providedthe fundamental concepts and goals for the early intervention.



Table 9—Functional Emotional Development Levels (FEDL)

Functional EmotionalDevelopmental Level Emotional, Social and Intellectual Capacities

I. Shared attention Experiencing affective interest in sights, sound, touch, movement and regulation and other sensory experiences. Modulating affects (i.e., calming

down).

II. Engagement and Experiencing pleasurable affects and growing feelings of intimacyrelating in the context of primary relationships.

III. Two-way intentional, Using a range of affects in back-and-forth affective signaling affective signaling and to convey intentions (i.e., reading and responding to affective communication signals).

IV. Long chains of co- Organizing affective interactions into behavioral patterns toregulated emotional express wishes and needs and to solve problems (e.g., showingsignaling and shared someone what one wants with a pattern of actions rather thansocial problem solving words or pictures).

1. Fragmented level: little islands of intentional problem-solving behavior.

2. Polarized level: organized patterns of behavior expressingonly one or another feeling state, e.g., organized aggressionand impulsivity or organized clinging, needy, dependentbehavior, or organized fearful patterns.

3. Integrated level: different emotional patterns—dependency,assertiveness, pleasure, etc.—organized into integrated, problem-solving afffective interactions (e.g., flirting, seeking closeness, and then getting help to find a needed object).

V. Creating symbols 1. Using words and actions together (ideas are acted out in or ideas action, but words are also used to signify the action).

2. Conveying feelings as real rather than as signals (“I’m mad,” “Hungry,” “Need a hug” as compared with “I feel mad” or “I feel hungry” or “I feel like I need a hug”). In the first instance, the feeling state demands action and is very close to action; in the second, it is more a signal for something going on inside that leads to a consideration of many possible thoughts and actions.

3. Using somatic or physical words to convey feeling states (“My muscles are exploding,” “Head is aching”).

4. Using action words instead of actions to convey intent (“Hit you!”).

5. Expressing global feeling states (“I feel awful,” “I feel OK,” etc.).

6. Expressing polarized feeling states (feelings tend to be characterized as all good or all bad).

VI. Building Bridges 1. Expressing differentiated feelings (gradually there are more between Ideas: Logical and more subtle descriptions of feeling states, such as Thinking loneliness, sadness, annoyance, anger, delight, and happiness).

2. Creating connections between differentiated feeling states (“I feel angry when you are mad at me”).



The FEDQ parallels the FEDL and is designed to assess the emotional, socialand intellectual capacities of the child. It asks the parent to rate each of the capaci-ties from 1–7, with the highest rating a parent could give his or her child is a 7. Theresults are described on page 51 and summarized in Table 10. As will be seen, theratings were very consistent, with only small variations until questioned about futureplans where the ratings of younger children who did not have defined thoughts yetlowered the average.

Regulation and Shared Attention

We asked parents whether or not their child could stay focused and calm whendoing what he wanted to do (mean=6.9) and also if he was able to remain focusedand calm when asked to do something that was not necessarily what he wanted todo, such as homework or chores (mean=6.5). In both cases, parents rated their chil-dren as having excellent regulation and shared attention.

Engagement

When asked if the children were engaged overall and the parents reported a 6.9average. When asked if they stayed engaged when they were upset, angry, or disap-pointed, the average rating of engagement under emotional stress was 6.1.

Two-Way Intentional Affective Signaling and Communication

We asked parents if their children could show their emotions in more gesturalways and if they could get an interactive flow of communication and interaction goingand sustain it. The parents reported that the children could, with an average 6.9 rating.

Social Problem Solving

The children’s abilities to engage in complex, shared, social problem solving alsogot very high ratings (mean=6.8). The youngsters were all able to sustain the back-and-forth interactions and could have very long conversations. They could not onlysay what they wanted, but also what they thought and what they thought of “you.”

Creating Symbols and Ideas

In terms of emotional ideas, the parents reported that the children could expresstheir feelings and ideas (mean=6.6). What was most striking is that most of thesechildren went from playing “on the floor” to being wonderful, creative writers anddramatists. As the parents saw them—the children in the follow-up study could ex-press both feelings and motives and demonstrated understanding and “theory ofmind” capacities at the highest levels.

Higher Order Thinking

When we looked at higher levels of thinking, we saw a little variation becausethe children ranged in ages from 12 to 18 years. When it came to understanding mul-tiple causes of behavior in themselves and others; understanding when they felt dif-



ferent in different situations and why they felt that way; judging their own and oth-ers’ emotional reactions; being able to reflect on their own internal standards; andbeing aware of their bodies and the impact of the change on them (these were ado-lescents going through puberty), the results showed ratings above 6 in all these areas.The children’s plans for the future were a little less clear, as seen with the mean =4.4 rating. However, those who were older than 16 years of age were much more de-fined in their thoughts of the future. Questions about independence regarding im-portant decisions also received slightly lower scores, which is to be expected. Thesechildren were aware that big life decisions were going to be made with their families.

Table 10—Parent Rating—Functional Emotional Developmental Levels*

Derived from FEDQ Mean

Regulation and Shared Attention1a—Calm/focus/able to perform task of choice 6.91b—Calm/focus/able to perform requested tasks 6.5

Forming Attachments and Engaging in Relationships with warmth, trust, and intimacy across full range of emotions2a—Stay engaged when upset 6.12b—Typical engagement/warmth 6.9

Intentional Two-Way Affective Communication—purposeful continuous flow of interactions with gestures and affective reciprocal interactions3—Response to emotional gestures 6.9

Complex Social Problem Solving—able to problem solve through social interactions in a continuous flow using long sequences4a—Length of sustained back/forth interaction 6.84b—Communicating needs 6.8

Emotional Ideas—able to represent or symbolize intentions, feelings and ideas in imaginative play or language using words and symbols (representational capacities and elaboration)5a—Expressing range of feelings 6.65b—Create story line with motives and emotions 6.6

Emotional Thinking—bridges and combines ideas to become logical and abstract feelings6—Explains complex feelings 6.6

Higher Level Capacities—7—Understanding multiple causes of others’ behavior 5.38—Varying feelings for one situation (13/16) 6.19—Judging own emotional reactions (13/16) 6.4

10a—Internal standard for self re education 6.110b—Role in peer relationships 6.110c—Bodily changes-awareness 6.411—Plans for future 4.412—Independent judgement re important decisions 5.2

*On a scale of 1–7 with 1 being the lowest score and 7 being the highest score.



Clinician Ratings of Functional Emotional DevelopmentalCapacities

When the clinicians (the authors and research assistant) rated the same children,whether through videotapes, verbal interviews, or recordings, their ratings were veryclose to the parent responses for all the core capacities. It is important to note thatthe clinicians rated the children separately from the parents using parallel ratingscales. See Table 10.

Table 11—Clinician and Parent Independent Ratings*

Functional Emotional Developmental Levels

Clinician Mean Parent Mean

Self Regulation 6.7 6.7Relationships 6.9 6.5Purposeful Communication 6.8 6.9Complex Sense of Self 6.4 6.8Representational 6.4 6.6Emotional Thinking 6.4 6.4

*On a scale of 1–7 with 1 being the lowest score and 7 being the highest score.

We also had the clinicians rate (based on the interviews) the level of empathy(whether it was compared to peers or to siblings), creativity, and talent. This pro-vides a picture of the full range of competencies of these children.

Table 12—Additional Clinician Scales

N=16 Mean

Empathic (compared to peers) 6.4Empathic (compared to siblings) (n=15) 6.1Creativity (compared to peers) 6.0Talents (compared to peers) 5.7

Achenbach Scales (CBCL)

To obtain an independent measure of functioning, we asked the parents to completethe Achenbach Scales (Achenbach, 1991). Three measures of competence are exam-ined. See Table 13. On the social competence scales, 94% were in the normal range;88% were in the normal range for activities; and for school competence, results weresimilar with 88% in the normal range. Two children in this group had learning disabili-ties (LD) (one was in an LD school and the other home-schooled). The overall compe-tence ratings were 82% with only 18% presenting some variations.



Table 13—Achenbach CBCL T-Scores—Competence Scales (N = 16)

Normal Borderline Clinical

Social Competence 94% 6%Activities 88% 12%School 88% 6% 6%Overall Competence 82% 12% 6%

When we looked at the CBCL syndrome scales, see Table 13—clinical signs ofanxiety, depression, withdrawal, socially acting out, or aggression—we found, by par-ent report that 75% fell into the normal range. Thirteen percent were in the border-line clinical range and 12% in the clinical range. However, children showing anxietyand depression, or slight withdrawal from activities and depression are typical ofmany adolescents during their teenage years. In our study, those who evidencedanxiety and depression, however, were very verbal and creative. The symptomswere circumscribed and easily managed.

The vast majority of adolescents in the follow-up study showed very good scoresin the normal range. One of the children had somatic complaints and seemed to feelsomewhat insecure about his changing body. Seventy-five percent showed no socialproblems, with the rest showing some, and two showing more significant problems.

Table 14—Achenbach CBCL T-Scores—Syndrome Scales

Normal Borderline Clinical

Anxiety/Depression 75% (12)* 13% (2) 12% (2)Withdrawal/Depression 82% (13) 12% (2) 6% (1)Somatic Complaints 94% (15) 6% (1)Social Problems 75% (12) 12% (2) 12% (2)

*The numbers in parentheses show how many children under 16 that we had the data set on wereinvolved.

Thought problems were reported for three children. (For a full explanation ofthese thought problems please refer to the Achenbach scale.) With regard to otherchallenges: ninety-four percent showed no difficulties in attention. Perhaps it’s be-cause of those long back-and-forth conversations that are emphasized in the DIRprogram. There were no indications of rule breaking, aggression, or other problems.

Table 15—Achenbach CBCL T-Scores—Syndrome Scales

Challenge % in Normal Range % in Problem Range

Thought Problems 82% (13 children) 18% (3 children)Attention Problems 94% (15 children) 6% (1 child)Rule Breaking Behavior 100% 0%Aggressive Behavior 100% 0%Other Problems 100% 0%



EARLY AND LATER MOTOR AND SENSORY PROCESSING PATTERNS

It is now well known that children on the spectrum experience significant sen-sory processing and motor planning difficulties. These challenges can significantlyaffect self-regulation, purposeful behavior and adaptation to the environment as wellas relating and communicating. Table 16 highlights the high incidence and perva-siveness of these challenges in the 200 cases. As can be seen, all the children in theoriginal study had significant problems with motor or sensory processing and all hadsome motor planning challenges. We later found that only 18% of the “very good tooutstanding” outcome group had significant motor planning problems and that theytended to have more hyper or mixed reactivity to sensation and a lower incidenceof under-reactivity compared to the poor outcome group. This finding suggested thatchildren in the better outcome group were more purposeful and capable of planningand executing (sequencing) ideas, and perhaps more likely to react or respond to theenvironment.

Table 16—Muscle Tone, Motor Planning, and Sensory Reactivity

All Groups Outcome Group Outcome GroupPresenting Good to

N=200 Patterns Outstanding PoorChart Review (1997) N=200 (58% of N=200) (17% of N=200)

Low muscle tone 17% 12.5% 23.5%

Significant motor planning problems 100% 18% 78%

Underreactive to sensation with 99% 30% 48%patterns of:

Craving/Stimulus Seeking 11% 7% 15%Self Absorption 28% 23% 33%

Hyperreactive to sensation 19% 25% 15%

Mixed patterns of reactivity to 36% 45% 37%sensation (hyper- in some areas like sound and hypo- in other areas like pain or touch)

We were very interested in finding out what happened to these patterns 10 to 15years later to learn more about the residuals of these early challenges as the childrenmatured. We asked parents to rate their children using the Sensory Motor Question-naire (Greenspan & Greenspan, 2001) and they reported that most of the sensory re-activity challenges resolved. Continuing sensitivities were reported regarding pain(47% were still hypersensitive); smell (33%); and taste (50%). But only some of thechildren, many of whom had been very picky eaters as young children, were stillpicky eaters. See Table 17.



Follow-Up Profiles

Table 17—Sensory Motor Profiles—Sensory Domains

N=16

Outcomes for Sensory-Seeking Follow-Up Group Normal Hypersensitive (Craving Sensory Input)

Sounds 87% 13% 20% at timesVisual Sensation 80% 20% 13% at timesTactile Stimulation 93% 7% 33% at timesPain Sensation 53% 47%Smell Sensation 67% 33%Taste Sensation 50% 50% 14%Motion (Vestibular) 93% 7% 29%

Overall, an impressive 88% resolved auditory, visual, tactile, and vestibular hy-persensitivities with the benefit of maturation, treatment, and activities. Of thosewith mixed profiles, we saw 22% still sensory seeking. These children also tended tobe more active athletically, which seemed to be a good solution.

Motor planning or sequencing is very much at the core of many of the deficits chil-dren with ASD show and may remain a challenging area for children who show theremarkable development this follow-up group did. On follow-up, parents reported40% were still below average on gross motor skills. They preferred playing individualsports and played tennis and/or enjoyed swimming or track. Others with better motorplanning were able to do more team sports. Some children with better visual-spatialthan visual-motor processing capacities preferred strategy games, such as chess.

The challenges with fine motor planning were manifest in part with difficulties inexecutive functioning. Some children had better ways of compensating than others.Sixty percent had poor handwriting but they learned to type very well. They alsohad difficulties managing time (related to sequencing) and the ability to follow mul-tiple complex directions still remained an issue for some. However, they had greaterstrength in verbal sequencing, or the ability to organize and elaborate on verbalideas (in contrast to motor execution). Memory was an important asset and mostwere very good at visualizing their families, searching for what they wanted, orient-ing in space and attending to details. More than half (60%) were described as big pic-ture thinkers and able to maintain long logical sequences. Overall, we still saw affect(i.e. emotional interests), driving improved sequencing capacities and attention todetails. Tables 18–21 summarize the findings.

Table 18—Summary of Sensory Reactivity

N=16

Resolved auditory, visual, tactile, and vestibular hypersensitivities 88%Continued to be hypersensitive to pain and taste 49%Continued to be hypersensitive to smell 33%Evidenced some sensory seeking 22%



Table 19—Sensory Motor Profiles—Sequencing

N=16

Average + Below Average Very Poor

Gross Motor Skills:The 40% who were below average on gross motor preferred individual sports and strategy board games 60% 40%

Fine Motor Skills:The 60% rating below average and very poor on fine motor skills, e.g., handwriting 40% 40% 20%

Table 20—Summary of Sequencing Related Functions

N=16

Average and Above

Verbal Elaboration and Abstraction 73%Multiple Directions 60%Orientation in Space 80%Visualize Family 92%

Table 21—Summary of Sequencing Related Functions

N=16

Mostly Sometimes Rarely

Multiple Directions 60% 34% 6%Logical Arguments 60% 40%Main and Sub Points 60% 40%Wide Range Elaboration 87% 7% 6%Visualize Family 92% 8%Systematic Search 80% 20%Big Picture Thinking 66% 27% 8%Good with Details 93% 7%

Academics and School Report Cards

Parents reported that this group of wonderful young individuals were gifted inmath, science, and music. They were very creative and enjoyed a wide range of ac-tivities at school. See Table 22. When asked what the challenges were in languagearts, the parents were able to tell us that at first many of the children had to work alittle harder on getting hidden meanings and making inferences, but were able tomaster these reflective thinking skills. Two children had difficulty learning to read.But, as can be seen, they progressed in language arts, with 83% average or above av-



erage. With respect to math and science, parents reported greater strengths with 62%performing in the superior and gifted range. Similarly, they reported 62% perform-ing in the superior range in social studies and history. See Table 22. Overall, parentsreported very high performance in all academic areas.

We also reviewed school report cards obtained from nine of the children.7 Wefound that 83% of this group were receiving all A’s and B’s in programs which in-cluded honors and advanced placement (AP) classes. On the 9 complete reports,there were only two C grades. Sometimes the children were good both in math andEnglish and other times they were stronger in one than the other. Many got A’s andB’s in science, history, social studies, and languages (some were even studyingLatin). See Table 23.

Table 22—Academics: School Reports 8th–12th Grades

Parent Reports on Entire Group (N=16)

Math and Science23%—Gifted39%—Superior38%—Average

Social Studies—History62%—Superior38%—Average

Language Arts30%—Superior53%—Average15%—Below Average*46%—Truly love reading46%—Creative Writers

*Reading comprehension—“getting hidden meanings,” making inferences relatively weaker; reading me-chanics still hard for two with learning disabilities.

Table 23—Academics: School Reports 8th–12th Grades

Fourteen (of 16) were attending high level public and private academic programs. One was in school for LD-Dyslexia. One was home-schooled.

N=9

Independent School Reports (n=9)

Receiving all A’s and B’s in programs including honors and AP classes (only 2 C grades in this group) 77%

A’s in Math 89%A’s in English, Language, Creative Writing 89%A’s and B’s in Science 89%A’s and B’s in History and Social Studies 89%A’s and B’s in Foreign Languages, including Latin 89%


7This is a preliminary report and follow-up will attempt to complete this information.


Only one-third of the children underwent IQ testing and those had average tosuperior scores. Most of the scores were balanced between verbal and performanceareas, but a few showed large discrepancies with higher verbal and lower perform-ance scores (i.e., lower on motor planning and visual-spatial processing).

Family Stress and Coping

The parents told us there had been stress in their marriages and families. Theyhad to work hard and often needed to be reminded that they were a couple, apartfrom their child, and needed to take care of themselves. Most marriages did stay to-gether and in some cases relationships improved as couples mobilized to take careof their child’s special needs. The early stressors had to do with, “Did I find the rightschool?” “Did I have the right program?” Parents said that what helped them mostin the early years was learning how to be an advocate for their children—being ableto speak up and get the educational programs and services needed. Siblings often ex-pressed a concern early on about what they were going to have to do for their littlesisters or brothers and needed reassurance. Within the DIR model of family inter-vention, siblings were usually seen and parents, siblings and the challenged childrenwere all encouraged to express and reflect on their feelings.

Looking Back at “Life on the Floor”

What is it like looking back at life “on the floor?” Families polled said that theydid an average of nine hours of Floortime each week. The range went from two tosixteen hours per week and as the children got older, that amount of time dimin-ished. The average number of years they “lived on the floor” was almost five (2.5 to10.4 years). When we asked, “How well did you actually do it?” and “Did you reallydo it?” on a scale of 1–7 (1 being the least and 7 being the most), self-reports aver-aged 5.75. When we asked how helpful it was, especially compared to all the inter-ventions they tried or were doing, 88% reported that it was the most helpful.

THE FUTURE

In considering the future, parents felt their children would be able to make thebest decisions for themselves. What was most important to all these families washow happy, related, and fully involved in life their children were. The parentsweren’t thinking about what profession their children would have or what theywould do in life; they were most interested in the fact that their children would haverelationships, families, and friends, and be able to cope with whatever might come.For example, parents stated:

“I think he will find something he likes to do and will stick with it.”

“When he wants something he usually finds a way to get it.”



In terms of future hopes, one parent stated, “he’s happy and confident; his socialskills are in place, academics are strong. He can be whatever he wants to be.” An-other said: “I believe the future is open and I believe he will be able to do it all.”These parents were optimistic about the future because their children had exceededtheir expectations given what they were told they could expect when their childrenwere first diagnosed with ASD.

DISCUSSION AND CONCLUSIONS

The children in our follow-up study progressed out of their core symptoms and,more importantly, their core deficits. They became warm, related, and sensitiveyoung people who have the foundations for an optimistic future. They demonstratedcompetence in a full range of activities. Like other adolescents, however, they werenot immune to mental health problems. Some showed anxiety and depression.However, they did not evidence the deficits or symptoms of ASD. While some resid-ual sensory challenges lingered, these did not derail their relating, communicatingand thinking abilities. Their progress illustrates the crucial importance of compre-hensive and intensive intervention during the early years provided by the DIRmodel and how a certain group of children can become empathetic, creative, and re-flective, with healthy peer relationships and solid academic skills. These childrenmastered the core deficits and reached levels of development formerly thought un-attainable with a family-oriented approach that focuses on the building blocks of re-lating, communicating, and thinking.

The DIR model provides the framework for implementing such a focus throughdaily floortime sessions supporting the continuous flow of engagement, symbolicplay and higher order thinking, as well as ongoing problem solving and reality basedlogical conversations, and reflective “talk time,” play dates and friendships. Parentsvalidated these mechanisms as the most responsible for their children’s improve-ment. In addition, a wide range of individualized activities and therapies address thecritical underlying regulatory and sensory processing challenges. For this group ofchildren the most intensive interventions were provided during early childhood andthe benefits continued long after the specific therapies ceased with the buildingblocks were established. The comprehensive nature of the intervention and the in-tensive level of daily interactions integrated relating, communicating and thinkinginto the fabric of every child’s and family’s life.

We will continue to follow this group and also conduct follow-ups with additionalchildren who have done very well. Furthermore, we will be conducting follow-upswith children who have made slower progress. In many respects, their gains are evenmore remarkable because of the greater hurdles they have had to overcome.

It is important to emphasize that whenever we report on a subgroup of childrenthat did outstandingly well, it is always with trepidation, knowing that there aremany families who are working hard with their children and not seeing the kind ofprogress that this subgroup experienced. And, again, we don’t know how represen-tational this population of children with ASD is and how many others share thecharacteristics of this group. We can note that children with slower or less progress,as reported in our 1997 study of 200 cases, are also making gains in their core



deficits. They are learning to become engaged, interactive and communicative, butwith more limitations in their language and reflective thinking capacities. We havealso worked with adolescents and middle aged adults with ASD and observedprogress (Greenspan & Mann, ICDL guidelines, 2000).

The most important lesson is that progress can continue into the adolescentyears and further. Therefore, it is most important to continue to try to work with thechild and his or her family on these most essential capacities for relating, communi-cating, and thinking. When we observe that a subgroup can make these kinds ofgains it is encouraging. Such observations suggest that we are harnessing the essen-tial developmental processes in using the DIR/Floortime model. The fact that a sub-group can move to a level of creative and abstract thinking thought unattainableeven by “high-functioning” children with ASD suggests that we are mobilizing criti-cal aspects of emotional and intellectual growth.

References

Achenbach, T. M. (1991). Integrative Guide to the 1991 CBCL/4-18, YSR, and TRF Profiles.Burlington, VT: University of Vermont; Department of Psychiatry.

Greenspan, J. & Greenspan, S. I. (2002). Functional emotional developmental questionnaire(FEDQ) for childhood: A preliminary report on the questions and their clinical mean-ing. Journal of Developmental and Learning Disorders, 6, 71–116.

Greenspan, S. I. (2004). Greenspan Social-Emotional Growth Chart. Bulverde, TX: The Psycho-logical Corporation.

Greenspan, S. I., DeGangi, G. A., & Wieder, S. (2001). The functional emotional assessment scale(FEAS) for infancy and early childhood: Clinical & research applications. Bethesda, MD:Interdisciplinary Council on Developmental and Learning Disorders.

Greenspan, S. I. & Wieder, S. (1997). Developmental patterns and outcomes in infants andchildren with disorders in relating and communicating: A chart review of 200 cases of children with autistic spectrum diagnoses. Journal of Developmental and LearningDisorders, 1, 87–141.

Greenspan, S. I. & Wieder, S. (1998). The child with special needs: Encouraging intellectual andemotional growth. Reading, MA: Perseus Books.

Greenspan, S. I. & Wieder, S. (1999). A functional developmental approach to autismspectrum disorders. Journal of the Association for Persons with Severe Handicaps (JASH), 24,147–161.

Interdisciplinary Council on Developmental and Learning Disorders Clinical PracticeGuidelines Workgroup, S. I. G. C. (2000). Interdisciplinary Council on Developmental andLearning Disorders’ Clinical practice guidelines: Redefining the standards of care for infants,children, and families with special needs. Bethesda, MD: Interdisciplinary Council onDevelopmental and Learning Disorders.

Mundy, P. (1993). Normal versus high-functioning status of children with autism. AmericanJournal of Mental Retardation, 97, 381–384.

Mundy, P., Sigman, M., & Kasari, C. (1990). A longitudinal study of joint attention andlanguage development in autistic children. Journal of Autism and Developmental Disorders,20, 115–128.

Siller, M. & Sigman, M. (2002). The behaviors of parents of children with autism predict the subsequent development of their children’s communication. Journal of Autism andDevelopmental Disorders, 32, 77–89.



Sparrow, S., Balla, D. A., & Cicchetti, D. (1984). Vineland Adaptive Behavior Scales. AmericanGuidance Service.

Contact Information:

Serena Wieder, Ph.D.1315 Woodside ParkwaySilver Spring, MD 20910

Stanley I. Greenspan, M.D.7201 Glenbrook RoadBethesda, Maryland 20814



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